hi everyone…..a question with Ruxolitinib

[Yvette49]

I’ve been on Ruxolitinib now for just 4 weeks, I’ve been getting nose bleeds on and off, but lately developed a cough, not phlegm, just a heavy dry cough. Has anyone else experience this please.

many thanks 🙂

[Mazcd Partner MPNVoice]

hi Yvette, so sorry to hear you are experiencing these symptoms. I have looked in our information book and listed under the common side effects: you may experience nose bleeds. The advice is to contact your hospital.

Best wishes, Maz

[Yvette49 in reply to Mazcd]

thanks Mazcd, I am seeing my Oncologist next weds, so will run it all pass her. I really do t mind going back on Interferon peg. ( my husband does it for me 🥴 ) I was ok on it…getting worried about putting more weight on with RUX, as I have been putting weight on, because I have breathlessness ( it’s being investigated this last 2 years, and nothing is showing up why, ( lung function was not normal, and echocardiogram showed fast heart beat ( I’m already on Sotalol for A.F. ) sorry, think I am rambling here….i feel like my body is falling apart, but maybe 75 I should expect it.

Sorry for rambling 🤗

[ainslie]

definitely contact your Haem/doc sooner than later

[Cja1956]

The Ruxo might be making you more anemic. That’s probably why you’re getting the nose bleeds. I would definitely call your doctor as soon as possible.

[Sherpa8]

yes I to have infrequent nosebleeds. I am on Rux. To be honest I think the nosebleeds are due to the daily 75mg Aspirin more than RUX. As I see bruising usually on my hand at the same time as the nosebleeds start. Best to run past your medical team? To be on the safe side.

[Yvette49 in reply to Sherpa8]

Thank you sherpa8 and everyone for their replies, if I get worse before my appointment next weds, I’ll call them 👍

[Chicagopv]

I've been on a low dose of pv and have asthma that develops into bronchitis about twice a year. I haven't head a heavy cough from ruxo, though. The medicine has lowered my immunity. Maybe that's what's going on?

[Scaredy_cat]

How are your platelets? Mine were low and ruxolitinib lowered them more. Skin bleeds were common

[Yvette49 in reply to Scaredy_cat]

Hi, not sure let, have blood test and see oncologist on weds. Haven’t noticed any bruising yet, I got a lot when on interferon.

[Mudmaker]

I was on Ruxilinitib for three yrs had side effect on higher dose. I settled on 10mgs twice a day. I developed a harsh dry cough gradually becoming worse. After about nine months I was coughing constantly day and night developed wheeze and tight chest. Was treated with antibiotics with no effect the only thing that gave me any relief was oral steroids. Inhaled steroids had no effects. Had chest X ray and chest CT scan which showed nothing. After a year and a half of being miserable I convinced haematologist that it was ruxinitib. My cough gradually improved after stopping them. The haematologist said they would yellow card this.

[Yvette49 in reply to Mudmaker]

Oh my goodness, glad you got sorted eventually. I keep thinking may I am getting a cold, but I don’t have other symptoms…slight phlegmy throat.

[jointpain]

I really hope your bloods are monitored at least weekly, if not find out why not. Were you transitioning from hydroxycarbamide? If you went straight on Ruxolitinib without reducing hydroxycarbamide for a few weeks, it is probably why you have nose bleeds.

[Yvette49 in reply to jointpain]

Hi, I had been on interferon peg, for about 5 years, started to be breathless ( and still) so I was taken off to see if it was that causing it,…which been proved it wasn’t. I have had lots of tests, X-rays scan etc, but they haven’t come up with anything yet.

I’m sure I’ll be having blood checks for a while on the Rux.

[jointpain in reply to Yvette49]

Do you get to know what your blood test results are? It makes a big difference knowing, and not just accepting what a doctor says.

[MWxxxx]

I've not had nosebleeds on Rux but I do get unexplained bleeding under the skin - hands, finger even one in my mouth. my platelets are in the normal range and no one seems to know why I keep getting bleeds. I've been told repeatedly that Rux isn't responsible but I didn't get this on Hydroxy and platelets and other bloods are similar. I don't get breathless or coughs. Infact my breathing is much better on Rux than it was on Hydroxy.

[socrates_8]

Hey Yvette49...

I'm also on Rux' now for 7years(?) Nose bleeds & other bleeding were some early issues I had also...

Can I ask is the 'Aspirin' you are taking "enteric-coated"? If not, please do ask for them as it can cause bleeding, and as others have suggested, it's more likely the aspirin than the Rux'

Also importantly, are you also taking an 'Anti-Viral' w/ your bi-daily Rux'?

Rux'n suppresses our 'Immune systems' causing us to become slightly anaemic & also placing us at higher risks towards many types of infection. Hence the need for the anti-virals...

However, seeing your MPN specialist should have it all sorted for you soon...

Best wishes

Steve

(Sydney)

[Yvette49 in reply to socrates_8]

Hi Steve, thanks for reply, I’m not on aspirin, I take Rivaroxaban. When I see specialist on weds, I’ll ask about anti-virals.

🙂

[socrates_8 in reply to Yvette49]

No problem Yvette49...

The anti-viral I'm taking is called "Valcyclovir" 500mg daily...

Infections are highly possible w/ suppressed immune systems Yvette...

Rivaroxaban, is an anticoagulant as I understand it. Usually preferred for those undergoing knee or hip surgery.

Please remember also that people on Rux' are not supposed to consume "Grapefruit" as doing so may have a negative effect on the medication etc.

"Grapefruit juice can increase the blood levels of ruxolitinib. This may increase the risk of side effects that affect your bone marrow function, resulting in low numbers of different types of blood cells. You may be more likely to develop anemia, bleeding problems, or infections."

Anyways, seeing & speaking w/ your MPN specialist is the best thing to do first of course...

Best wishes Yvette

Steve

(Sydney)

[Yvette49]

Up date, I saw a locum instead of my usual haematologist, he didn’t think the cough was linked with RUX !!! My bloods were ok he said. Didn’t have anything to say about my nose bleeds, but thankfully, only spotting lately. He has put me on antibiotics for 5 days. I go back on 18th and hopefully see my usual lady.